Create a Plan for an Adult Child With Disabilities

Many families want to leave behind a little something to ease their children's way in the world. But for parents of an adult child with disabilities, the estate plan can be crucial in guaranteeing a loved one's secure financial future.

As a result of medical advances, adults with severe disabilities are living longer than ever. So it is critically important to draw up a financial plan that will protect your retirement and your child's needs after you're gone, says Nicki Biamonte, a special needs planner with the MetLife Premier Client Group. "If the child is 30 years old and could live to 90, that's a long time to plan for," Biamonte says.

Biamonte helps families review their current expenses, assets and income, and make projections far into the future. If the adult child is living at home, she estimates housing costs after the parents die. Biamonte may recommend that the parents buy long-term-care insurance, which would defray some costs if they become ill, to preserve a nest egg for their child's needs.

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Parents should also write a "letter of intent" -- a road map for future caregivers and trustees on how best to care for your child. The letter would describe every possible facet of your child's life, including favorite foods and activities, the relatives and friends he should continue to see, and his medical and therapy regimen.

Choose a lawyer who specializes in special needs planning to draw up your estate plan. This expert will help you navigate the maze of rules for public benefits that provide income, health care and community services to persons with disabilities.

Consider an adult child who's receiving Supplemental Security Income. As an SSI recipient, she's eligible for Medicaid-based services, such as vocational training -- unless her income and assets exceed certain limits. When her parent dies or retires, the child may be switched to a higher benefit based on the parent's Social Security earnings record, says Janet Lowder, a lawyer in Cleveland, Ohio. Government caseworkers may mistakenly suspend the beneficiary's Medicaid eligibility. At that point, Lowder says, she will intervene and "make sure the caseworkers understand that they can't count this additional income" from Social Security.

Even well-off parents should preserve a child's eligibility for these benefits, which can relieve the devastating costs of care. So it's essential that your child not own assets outright that could exceed the legal limits.

This is especially true after you die. Your lawyer will probably set up a "special needs trust," which will protect benefit eligibility. When you die, you would leave money in the trust instead of directly to your child. Instruct relatives who want to help to do the same.

Your child's benefits will likely pay for basic needs. The trust could pay for extra things such as music therapy and a portable wheelchair, as well as many "quality-of-life expenses, such as a television or going to a baseball game or a play," says Patricia E. Kefalas Dudek, a lawyer in Farmington Hills, Mich.

Choose a trustee carefully. The trustee will invest the funds and pay the bills, and find experts to keep tabs on caregivers and public benefits. Many special needs lawyers will take on this role, and disability-related advocacy groups often serve as trustees.

Some parents forgo a trust, and leave the entire estate to their other children, expecting they will care for their sibling. But your other children could run into financial trouble of their own or may be disinclined to help out. And Lowder warns of the scenario in which "the other daughter who is providing for her sister could die, and the money will go into her estate for her husband and her children."

A Home for Your Kid When You're Gone

An essential part of your planning is to find suitable housing. Dudek says she encourages parents to move their child out of their home before they start to decline. "It will be less traumatic for the person with disabilities," she says. "When a parent dies, the adult child will be in mourning. On top of that, they are losing their primary caregiver and their home." Also, she says, by finding housing early, parents can make sure the arrangement is working well and make any necessary changes.

A special needs lawyer can help you find housing, such as a licensed group home or assisted living. Some parents buy a condo or house for their adult child, often finding a roommate with a disability; the two would pool Medicaid resources to finance caregiving and other services. The property would be moved into the special needs trust when the parents die.

With Dudek's help, Joseph Bricker, 73, and his wife, Sarah, 70, set up a special needs trust for their son, William, 44. William is a quadriplegic, as a result of a childhood brain tumor, a stroke in his thirties and other issues. He's on a feeding tube and needs 24-hour care. "My wife and I are getting old, and we had to find a place for him while we were still here," says Bricker, who lives in Oak Park, Mich.

In 2009, William moved into his grandfather's house after he died. The house is a mile from the Brickers' home. The parents installed a walk-in shower and widened a door to accommodate a wheelchair. Medicaid paid for a wheelchair ramp and also pays for 24-hour care delivered by a local home health agency.

The trust, which owns the house, pays for the property taxes and insurance, and William's government disability income pays some expenses. Dudek and William's sister, who lives in New York, are successor co-trustees.

Besides getting legal help, you should get in touch with the associations that advocate for your child's disability, such as United Cerebral Palsy and Autisim Speaks. Local chapters offer family support groups, where you can learn about community resources.

These groups also help with long-range planning as do the 18 affiliates of PLAN, for Planned Lifetime Assistance Network. PLAN of Southwest Ohio in Cincinnati, for example, monitors about 100 adults, most of whom have mental illness, such as schizophrenia. More than half of the group's clients do not have parents, either because they are dead or not involved, says Stacy Martz, the executive director.

Employees will regularly call or visit clients, help them find jobs or recreational activities, work with public agencies and trustees, and help with finances. "We do what families have done for people with disabilities," Martz says.

These planning resources may be of help. Through the Special Needs Alliance (www.specialneedsalliance.org) and Academy of Special Needs Planners (http://specialneedsanswers.com), you can find a lawyer and information on trusts, benefits, housing and other issues. Disability.gov is a government site with links to information on benefits, programs and services. The Arc (www.thearc.org) advocates for those with intellectual and developmental disabilities. Its site provides resources relevant to those with other disabilities.